Treatment / support

Michele - posted on 04/16/2010
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3 moms have responded
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What is everyone doing to help their kids? My son was diagnosed about 6 months ago and I feel frustrated because I don't feel like we are doing enough to help him. The doctor that diagnosed him is a counsilor, and has meet with him several times but that is it. We tired to get an IEP on our own but it didn't work out so well so, we recently hired and advocate to help with the school issues.

What all did you kids do to get tested? Am I missing something? How are you treating it? Are you a member of a support group that meets in person?

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Lisa - posted on 04/28/2010

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One thing that we did which really seemed to help Gabe was talk to him and TEACH him all the non verbal social rules/cues. We talked about it, acted them out, made faces with eachother in the mirror and had to guess what emotion we were trying to express without words. We did all that when he was very young, but it helped him to recognize those faces when playing with friends later. The same goes for body language - like stepping back from someone when they step forward into your space, crossing arms and furrowing your brow, how boredom is shown (by kids - rolling eyes, yawn, slighly turning your back on the person talking, etc.). These can really help with social interaction. We also at night during dinner, to this day (Gabe was diagnosed in 1st grade, is now 10, and we started teaching the social pieces we saw were missing at 3), we talk about our days and teach Gabe that he has to ask questions to include others. It can't always be about him, his day, what he wants to talk about - legos, pokemon, etc. We try to teach him that those things aren't as interesting to us as it is to him. He's been flabbergasted by this at times! Very funny and cute, but this is all necessary.

How is your son doing with the rules part of playing with kids? Gabe has struggled with this from early on. It's still a battle to help him understand that rules can be fluid when kids are playing on a playground, or there might be "house rules" that vary from group to group.

I didn't look to see how old your son is, but we have been teaching Gabe what Asperger's is for a while now, encouraging him to read books on the subject (All Cats have Asperger's is a GREAT one!), and during April, maybe even talk to his class about it (it's Autism Awareness month). There's nothing WRONG with your child - he's just wired differently. And if we didn't have people who were wired differently, we wouldn't have things like the lightbulb, physical laws of space and time, a computer in every home. Make sure that when you do talk to him about this, and the weaknesses that come with it, you find and focus on the strengths, too.

We are very lucky. Our son's Asperger's is quite mild and made more so since we took our neurologist's advice and drastically altered his diet. We are often able to reason with him, explain differences, and he usually comprehends what we are trying to teach him, even if the subject matter is too abstract for him (especially playground type rules). I don't know what symptoms your sons exhibits or what your main struggles are, but I've just brought up a lot of ours here. I hope they help.

As for books - read anything you find. There are nuggets of good info in all of them, even the not that great books. I got a lot out of "Look me in the Eye" by John Elder Robison. He was 40 when he was diagnosed and had a very troubled childhood/upbringing. Through him, I learned more about Gabe's gifted side of thinking and better yet, a way to help him fall asleep at night! Piles of pillows - about 6! Crazy, yes. Weird, yes, but hey, it works! I'll go through my books and try to find some of the better ones for you. Sorry for long note - I'd rather be more thorough than less. I would have done anything for something like this 6 years ago!

Thanks Lisa that is very helpful! I love this site for just that reason. I am really working on the structure thing but that is kinda difficult at time since my husband is a police dispatcher and his schedule is always changing, and I am in college right now so mine changes a lot also. I have luckily been able to keep my class on the same night of the week for the past year. My oldest son has ADHD and I learned from him that staying up late and major schedule changes reek havoc so we are pretty consistent there.

What books can you recommend? I have picked up a few but most of them are pretty basic. What should I be doing for social issues? Right now I encourage him to go out and play with the neighborhood kids when they come looking for him, and I tried to get some to stay over. What do you think? We tried Soccer, and football but that didn't go real well.

We have been doing most of what our son needs on our own...I feel like most counselors, teachers, etc. don't even have a clue what asperger's is. You probably won't get an IEP with out a full psych eval (expensive unless you can get one referred through school). My son's asperger's is mild enough that he really only needs accomodations, not a full IEP. The teacher's I've worked with have usually been able to make those accomodations on their own, but a formal request may be called a '504' depending on your state.

I would highly recommend reading, reading, reading everything you can and doing what you learn is best for your child. If there is anything I have learned about asperger's or austism in general, it's that every kid is different. And with DSM dropping the asperger's diagnosis and bunching it in with austism in general, that will be even more the case.

I recommend keep talking to parents in your situation to get more ideas how to help. I would tell you to structure your lifestyle, purposefully teach about how unstructured life can be and allow for those experiences, encourage appropriate social behavior whenever possible, and to try some of the dietary changes - such as no dyes, pesticides, preservatives, or high fructose corn syrup. Organic meat and dairy if possible (or more natural - no hormones, etc.). We have had HUGE success with all of the above.